On Saturday, February 23rd we held our annual Rare Disease Day event. This year we joined patient families, faculty, and students together to celebrate Rare Disease Day in order to raise awareness and increase advocacy for rare diseases. We celebrated a little early so that the community in our regional network could attend. We hosted four different discussion panels focusing on rare disease research, ethical dilemmas within rare disease work, patient family insights, and student outreach through our Rare Health Exchange program. The goal of our event was to engage our students, faculty, patient families, and local community in a group discussion to address the challenges the rare disease community faces. Our panels facilitated discussion across many disciplines in order to collaborate on solutions for improving the many roadblocks rare disease patients encounter including disease management, time for diagnosis, new therapies and education for health professionals.
We will be posting more photos soon so come back to check out more photos from the event!
Check out the video below to see our very own Dr. Shaun Lee and his band perform Notre Dame’s rendition of the Fight Song for rare diseases!